Isla’s next EUA in Melbourne was on Wednesday the 27th of May. South Australia’s borders were still closed, so we knew we would be required to self isolate for 14 days again upon return. There were still very limited flights available. The hospital can only book Qantas and Virgin flights for us and the only flights available were with Jetstar. To make her appointment flying with Jetstar we probably would’ve had to leave Monday and not have been able to return until Friday, just due to flight availability. We also weren’t keen to run the risk of having flights cancelled at the last minute and being forced to make last minute changes to our plans again. On top of that we just felt more comfortable being alone in our car, rather than travelling on a plane and being in airports with other people during the COVID crisis.
As difficult as it was to not all be together and be able to share the drive, we decided that I would stay home and Garreth would drive to Melbourne alone with Isla. We didn’t really like the idea of me being in self-isolation at 33-35 weeks pregnant in case anything happened with the baby and I needed to go to hospital during that time. We knew, as strange as it was, that I would still be able to live in the same house as Garreth and Isla while they were in isolation and I would still be able to come and go. Obviously this made it easier to still be able to buy food and I was able to complete my last week of work before commencing maternity leave.
So Garreth and Isla headed to Melbourne at about 10am on Tuesday morning May 26. It was a very long day for them and after a slow start with their first stop on South Terrace in the city for Isla to go to the toilet, followed by a lot of road works through the hills, they eventually stopped at Keith for lunch. Isla had a bit of a run around and got to try chocolate milk for the first time!........ which she didn't even like. Isla eventually had a sleep in the car from the border to the Grampians and they arrived in Melbourne at about 8pm. They got settled into the hotel room, had some dinner and went to bed.
Garreth set an alarm for 6am as Isla had to fast from 7am, so they woke up in the morning and had some breakfast. They went out for a walk in the morning and Garreth got a coffee. He basically had to fast with Isla too as we couldn’t to the usual ‘one of us sneak off and eat something while the other distracts Isla’. Then they just killed time in the hotel until her admission time of 1pm.
They headed across the road to the hospital and were admitted at 1pm. The hospital was still doing temperature checks and questioning everyone upon entry as well as the entry to the day surgery admission desk. They were admitted at 1pm, but were told they could probably go for a walk and come back about 2pm, so they did that. When they returned at 2pm they waited in the waiting room for about 1/2hr before going through to an individual bed bay to await all of the preparation prior to going into theatre. Garreth saw Sandra this time and chatted to her for a while. Again, only only Dr McKenzie was conducting the EUA, while Dr Elder was offsite making phone calls to families after each procedure. Isla did really well with all of her obs and eye drops again. The anaesthetist used the same pre med as last time, as it worked quite well. This was the nasal spray, which Isla doesn’t enjoy, but again it worked well. She was third on the list and went into theatre around 3:30pm.
Garreth went downstairs to get some food once Isla was in theatre and waited to hear that she was finished and in recovery. He was back in recovery with her by about 5pm. James Elder made a video call with both of us after he had seen Isla’s images, however I missed my text message to join the call, so he just spoke to Garreth.
James was happy, there were no new tumours and the main tumour was still looking stable. Sandra had mentioned earlier in the day that we may just continue to be seen in Adelaide from now on, but James said he did still want us to come back to Melbourne in 2 months time. This was great news that things were looking stable and that they were comfortable for us to skip a month. We were also a little relieved to still have at least 1 more EUA in Melbourne before being handed over to Adelaide. So we will be returning to Melbourne again at the end of July.
At one stage it was looking like South Australian borders could be re-opened early July, so we were hopeful that we might be able to travel to Melbourne at the end of July without having to self isolate for a third time. However, on the 26th of May South Australia recorded another positive COVID case. This was the woman from the UK, who had travelled to SA on compassionate grounds after completing part of her self-isolation period in Victoria. It seems that this may push any easing of border restrictions out even longer and could mean that we will have to self isolate for a third time after this trip. We should also have a newborn baby by then, so depending on where everything is at at the time; it will likely be another trip with Garreth and Isla alone. I would definitely like to be there if it is going to be Isla’s last EUA in Melbourne to see everyone again and thank them for everything they have done for us, but we will just have to see what happens at the time.
While the report from the James in the video chat with Garreth was certainly positive and we knew everything was looking stable, we always know there is no guarantee that her main tumour is completely dead. There is still a chance it could start growing again. Without giving it a lot of time, I don’t think they are going to commit to say her main tumour is definitely 100% dead. However, we were pleasantly surprised with the wording of the report and this is the most positive it has ever sounded that it is very likely dead.
‘I am pleased to report that this examination appeared entirely stable. There is no evidence of any new tumours in either eye and all previously treated tumours appear inert.’
His report also mentioned that the new ocular oncologist for SA, Dr David Sia, would be returning to Adelaide in the middle of the year and would commence working late July. We knew this was coming at some stage, but when Sandra mentioned we might be continuing Isla’s EUAs in Adelaide, we didn’t know if she meant with the paediatric ophthalmologist or with Dr Sia, so it’s good to know that things are progressing with him and we may be transferred to his care later in the year. We will certainly miss the team and the 'well oiled machine' that is EUA day in Melbourne though.
Garreth and Isla woke up early Thursday morning so they got away from Melbourne at about 6am. Isla was brilliant in the car on the way home and slept from Melbourne to Ararat. They stopped for breakfast at Ararat. The border crossing went fine. They got a lovely police officer who sympathised with us, but confirmed that they would have to self isolate again. The police officer suggested that the recent positive COVID case in SA could mean that restrictions remain for a little longer and we would likely have to self isolate again late July. They stopped for lunch at Keith and then Isla slept all the way from Keith until pulling into our driveway at home, after waking briefly through some road works in the hills. A police officer came to our house on the Saturday after they returned to ensure Garreth and Isla were self-isolating.
We are now looking forward to our 8-week break where we can just focus on the impending arrival of Isla’s new sibling. Since Isla has the genetic form of retinoblastoma, but neither Garreth nor I carry the gene mutation, there is a very small chance that our next baby will also have the mutated gene. So the baby’s cord blood will be tested at birth and the opthalmologist will visit us before we leave the hospital to visually assess the baby. Fingers crossed everything goes smoothly with the birth and our next baby doesn’t have retinoblastoma as well.
Border Restrictions
On the 22nd of May, before Garreth and Isla travelled to Melbourne for her last EUA, I sent an email to the Premier stating our case and asking if anything can be done to make our lives a little easier regarding border restrictions and mandatory self-isolation. Not that I expected the Premier himself to read my email, but I couldn’t find any contact details of a more appropriate person. It really did seem like people required to regularly travel out of the state had just been overlooked. I didn’t think much would come from my email and I wasn’t really expecting to hear back from anyone. I wasn’t asking for an exemption specifically, just for them to consider what people have to go through in our situation.
On Monday afternoon the 8th of June I received a phone call from a lady from ‘SA Health Exemptions COVID-19 Response’. She said my email had been received and was discussed by the exemptions panel, but unfortunately an exemption had been declined. She just had a few questions to ask me to gather a bit more information about our situation and Garreth’s job. She was then going to send me an email confirming what we had discussed on the phone and asked me to reply to that email with some more specific detail about Garreth’s job, what he does, where he goes, who he sees, how many people he comes in contact with, if he can work from home, if he can work from the office only etc. She was really lovely and helpful; she used to work at the WCH in the oncology ward and has dealt with retinoblastoma children before, so she did have some understanding of the treatment pathway.
I got off the phone feeling a little disappointed that nothing had changed, but really happy to have received a call and to know that they did consider our case and were trying to do what they could to make things a little easier for us. Before I even got around to checking my emails she called me back to say that they have decided to grant Garreth an exemption to go to and from work during his isolation period. She said he could go to work tomorrow (Tuesday). While Garreth was out of isolation on Friday anyway and this only made a difference of Tuesday-Thursday this week, she mentioned he would also be able to get an exemption when we travel in July, which will be a great help! We have already had to use up so much sick/carers and annual leave taking Isla to appointments at the best of times, losing an extra 2 weeks after travelling to Melbourne every time has meant we are down to taking leave without pay, which isn’t ideal with a new baby on the way as well as both of us losing hours due to the crisis anyway.
I mentioned that Garreth’s job mainly involves him going to construction sites to work on machinery at different locations and asked if he was able to do that. She said they would prefer that he just work from the office if he can, but if he needed to go to site he would just have to limit the number of people he comes in contact with and obviously get tested immediately if he develops any flu like symptoms. Garreth thought it should be fine to stay at the office for these next three days anyway and we might just touch base with her again in July to confirm what he can and can’t do at that time. She said she would let SAPOL know that he had been granted an exemption for work and I thanked her very much for her time.
Shortly after that Garreth received a phone call from SAPOL to confirm his hours of work and they reiterated that he could only travel to and from work within those hours and other than that he was still required to self isolate at home. But that still felt like a bit of a win during a pretty shitty and stressful few months!
© Alison Davey 2021